Posted (Tina) in All Posts on March-24-2009

Ella picked her night to sleep last night. She would not go down until 11:15ish, but then she slept solid until 7am. It was great!

We had a wonderful follow-up appointment with Dr. Abman today. Ella was not in the best mood. She was clingy and melted down several times. But, he was pleased to see the great progress with her, despite her tantrums. He is interested in seeing how she does over the coming weeks. More so, he wants to see her chest x-ray and echocardiogram scheduled for April 16th with Dr. Fagan. This will show how well her stents are working and let us know if the flow is the same, better or worse. We’re hoping that Ella can continue strong.

Dr. Abman agreed to discontinue the Captopril! We’re excited. We feel like this is another great step in the right direction for Ella. We haven’t noticed any negative impact over the past few days. Since Captopril is a blood pressure medication, that is something we will be watching closely to see if her baseline changes once she is off Captopril for a period of time.

I asked about the diuretic she is taking – aldactazide. Josh specifically wanted to know the long term impacts around the use of the diuretic. Dr. Abman noted that it should not make her nephrocalcinosis on her kidneys worse, which is good. Given her current weight and the dosage she is taking, he confirmed that it is having minimal therapeutic impact right now and will have less and less as she gains more weight over the coming weeks. This, in combination with no Captopril, means that if she can continue strong over the next couple of months, there is a chance that we can look to get rid of that medicine too!

This morning at home, Ella weighed in at 9.86 kilos and this afternoon on their scale, she weighed 10 kilos. She is up to 1137ccs of fluid per day which is giving her more than adequate calories to keep her growing. So, he wants us to hold steady with her food until we have the echocardiogram and chest xray to ensure that there is no fluid build-up.

He was a bit concerned that Ella is still coughing each day. We’ve always noticed it since the Captopril, and since we will be discontinuing it, he wants to see if she continues to have a chronic cough. If it does not go away on its own, we may need to investigate further. It may indicate some asthmatic symptoms and he mentioned that a medicine such as Singulair might help. For now, he doesn’t want to add any more medicines. He simply wants us to monitor the cough and report back to him.

We’re in a bit of disbelief. Tomorrow is one month since the procedure and aside from Ella melting down in even the minor things (which seems like almost always right now), she is doing so much better on the medical front. And we have not had a breakthrough like this ever for her. It has always felt like things have been tough and not worked in her favor…and although she’s overcome many things, its taken months and weeks to overcome. This was the first procedure where she rebounded quickly and immediately started doing better. So, we’re in a bit of disbelief, but very thankful. And we just pray that she can continue on this path over the coming weeks, so she can continue to grow stronger.

1 Chronicles 16:9 (NIV)
Sing to him, sing praise to him;
tell of all his wonderful acts